no more RLS!!

[cesoni]

A huge thank you to SueJohnson for recommending me to go to Dr Mark Buchfuhrer. He knows RLS inside out. After spending a good hour with him about my history with RLS he prescribed Buprenorphine sublingual films. The first night i stopped cold turkey Ropinerole and Gabapentin and took one-fourth of the sublingual film and like magic my RLS disappeared. Buprenorphine should be prescribed to everyone with RLS. I still canbelieve that after 20 years my RLS symptoms disappeared. Thank you, Sue!

[SueJohnson]

That's great!!! So pleased for you.😀

[Spaceclaim]

Great news but your symptoms only subside when you take this medication right? What are the long term side effects of it?

[Joolsg in reply to Spaceclaim]

None.I've been on it over 3 years. My RLS disappeared overnight. Of course I'll have to take Buprenorphine for life, but it is miraculous. On Ropinirole for 12 years and it stopped working after 4 or 5 years. I spent the next 7 years in denial, compounded by ignorant Doctors who told me it was disease progression and there was nothing else.

[SueJohnson in reply to Spaceclaim]

Welcome to the forum. You will find lots of help, support and understanding here.

Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS.

When you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible.

When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20% and 45%. If your ferritin is less than 100 or your transferrin saturation is not between 20% and 45% post back here and we can give you some advice.

Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip), Neupro patch (Rotigotine) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.

Instead ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin).] It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.

Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin)

Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not up-to-date on it at Https://mayoclinicproceedings.org/a...

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.

By the way it would really help us to give you advice if you would indicate on your profile what country you live

[SueJohnson in reply to Spaceclaim]

All medicines have side effects, even aspirin. Some can't be tolerated. Some can be managed. Some disappear after a few weeks. Some are worth it for the relief from RLS. Some people have none.

[cesoni in reply to Spaceclaim]

I do have to take it every night so Symptoms are gone. I even took a nap one day, I haven’t been able to do that in almost 20 years, as soon as a laid down the legs would start bothering me. Only side effects a had for the first 3 days was a very mild headache the next day, it stopped on the 4th day. What is so unbelievable is that I stopped taking ropinerole and Gabapentin cold turkey and had no withdrawal symptoms whatsoever. Its a game changer!

[Joolsg]

Fantastic.I also had miraculous results on it.

I've just spoken to a research team at Cambridge University, UK, and they've asked me to compile evidence of Buprenorphine's effectiveness to support a plea for funding of a Cambridge University trial.

Would you be willing to let me share your story?

If so, I'll message you.

After 3 years, I still take the same low dose of 0.4mg and have ZERO RLS night or day. I sleep 8 hour's a night.

[cesoni in reply to Joolsg]

Absolutely!

[CsiguZ in reply to Joolsg]

Comparing to other opioids like tramadol, what are the benefits of Buprenorphine for RLS?

[Joolsg in reply to CsiguZ]

It has a half life of 25 hours and releases most of active ingredient in first 11 hours. So, no mini opioid withdrawals during the day, which are common for RLS patients and the main symptom of opioid withdrawals is RLS.I tried tramadol and was on Oxycontin for 5 years. It didn't really help. I still had very severe RLS and was up 2 or 3 times a night.

On Buprenorphine, my RLS disappeared. Completely. Three years later, still zero RLS.

[CsiguZ in reply to Joolsg]

Thanks Joolsg. And do you use sublingual from it? How much time does it take to be effective after you take it? And do you know if it was effective against PLMD as well? For me Tramadol is quite effective for RLS, it takes approximately 1,5 hours to kick in, but sometimes (especially if the temperature is high) I experience RLS symptoms regardless if I take Tramadol in time.

[Stanspl in reply to Joolsg]

Deffo

[Boldgirl45]

Hi there - I guess this guy is States side ? Does he do online consulting? Is it super difficult to get an appointment? Thanks !

[cesoni in reply to Boldgirl45]

Here is his info

rlshelp.org/office.htm

[Boldgirl45 in reply to cesoni]

Thank you so much!

[Boldgirl45 in reply to cesoni]

and sorry just to be clear - no withdrawals from the others??

[cesoni in reply to Boldgirl45]

none

[SueJohnson in reply to Boldgirl45]

He will answer emails and is very helpful [e-mail]

[SleeplessinMO]

Did you know that RLS can be a symptom of kidney disease?

[BocaMom]

Wow this is great news - WTG!!!!

[TheDoDahMan]

Dr Buchfuhrer saved my life also, but with a prescription for low-dose (10mg/day) methadone, not buprenorphine. Do you (or anyone) know why he prescribes one versus the other? As a medicare patient, I pay about $15/month for the methadone - could price be a factor?

[cesoni]

I paid $100 for mine